On Monday, a friend sent me an illustration from an Instagram account that I’d never heard of (I’m now hooked). Though the artist’s life experience is, of course, different from my own, I was struck by how deeply her sentiment—one that I didn’t realize I shared—resonated with me.
I’m guessing that a visual would be helpful at this point, so without further ado, here’s the picture in question.
I posted it on my personal Facebook page and was really pleased with the response that it received from family and friends. Until, that is, the likely inevitable doubt set in. Would my loved ones wonder if I’m putting on an act for them when I joke about and downplay my seizures, as I often do, in part as a coping mechanism, in part because—let’s face it—Seizure Me can be GD entertaining, in part because my nuclear family’s unofficial motto is “Anything for a Laugh”? Would they look back on their interactions with me as I’ve navigated my chronic illness these past fiveish years and worry that I think they’ve behaved inappropriately if they’ve ever called me “inspiring” (nope—most of the time, it’s flattering, to be honest)?
That’s not it at all.
In a nutshell: if I happen to inspire you as I go about my business, doing my thang, that’s great. However, I shouldn’t have to; I shouldn’t be expected to inspire anyone, not even my mom (sorry, Mom), just as I don’t expect or need to be inspired by any of my friends but am on a very regular basis because they’re cool people doing awesome stuff/juggling hard things/impressing me by being who they are. /lovefest
I’ve worked hard at striking a fine balance in terms of how I deal with my epilepsy and my presentation of it to the world at large. Most of the time, maintaining a generally positive, upbeat attitude and tone has a purpose that benefits all parties. I get to forget that my life isn’t progressing as I’d like it to and that my brain frequently rebels against me, and everyone gets to have a better time than we likely would if I spent our entire chill session describing the seizures I’ve had since our last visit, or the side effects of my six meds, or my remaining ABI-related deficits, or my most recent hospitalization, or the plain oatmeal I ate for breakfast, for that matter, in minute detail. As I see it, it’s a win-win.
Sometimes, though, the realities of my chronic illness are too much, and I can’t pretend otherwise. Sure, I could stay home by myself and wallow in the pleasure (?) of my own company, but even when things are really, truly awful, there are days that I’d much rather get out of the house, and it makes me very happy that I have pals who’re willing to guide me to the coffee shop on the corner and be on seizure-alert when that’s what’s needed. Believe me: during periods like these, when all I’m capable of is sitting at a table flipping pages, not reading, I don’t feel particularly inspirational, and I’m not going to expend energy that I don’t have in order to perform a role.
As I announce to my husband after long and boring stories that I excitedly and hurriedly recount to him, usually featuring something that he doesn’t care about, “That’s all.” For now, anyways. Since I’m still processing my reaction to Mari Andrew’s illustration, I might come back to it when I have something more profound to say. In the meantime, I’ll flip some pages and take a nap.